The latest in autism research

The Pediatric Insider

© 2015 Roy Benaroch, MD

Science: it may not always be the fastest, coolest, or sleekest way to get from one place to another. And it certainly is prone to dead ends and tangents. But if you want to really understand what something is all about, real science and real research are your best tools. Some great examples come from a few studies that came out this year about autism.

A British study from May, 2015 (summarized nicely here) looked at sets of twins, looking not only at diagnosed autism but at autistic behavior traits. Bottom line: autism is very largely genetic, as demonstrated by the higher association of autistic traits in identical twins. Since sets of twins largely share the same environmental and family influences, looking at identical (ie sharing the same genes) versus fraternal (sharing genes only as siblings) is a well-established way to separate out genetic and environmental influences. Using Fancy Math, the authors conclude that autism’s roots are found in one’s biologic make-up at least 74% of the time, and perhaps much higher than that. Studies like this will help future researchers concentrate on the most likely candidates for autism’s cause.

Another cool study, this one from the University of North Carolina, took the role of genes even further. We know that about 1,000 genes have been linked to autism—meaning that certain variations are more likely to occur in individuals with autism. What these researchers did is take that further, finding the exact functioning of one of these candidate genes. They found that the gene encoded for an altered protein that incorrectly flags other proteins in a cell for destruction. This causes the appearance of what are called ‘spines’ on cells in the brain—and, sure enough, we already knew that these spines were more common in kids with autism. It’s like connecting a circle—you start by figuring out which genes are present in autism, then figure out what they do, then confirm that the result of having these genes is present in children with autism. That’s how we go from understanding why autism occurs (a change in a gene) to how it occurs. And once we know how it occurs, we can start working on reversing or stopping the process, to preventing the altered gene from causing problems.

The internet is a noisy disco of flashy memes, slogans, and catchphrases. And, of course, ubiquitous Google searches ironically misunderstood as “research.” But those sorts of things don’t help anyone really understand what’s going on. Want to understand and help families with autism? Support the science, not the noise.

MMR litigants’ new target: their own lawyers

The Pediatric Insider

© 2014 Roy Benaroch, MD

This would be funnier if it weren’t so sad.

Back in 1998, British gastroenterologist Andrew Wakefield published The Study That Started It All: 12 children he claimed had developed autism as a result of the MMR vaccine. Since then, that execrable “study” has been shown to have been an “elaborate fraud”, with findings faked to support Dr. Wakefield’s own patent application for a competing vaccine. He was also collecting payoffs from plaintiffs’ attorneys suing vaccine manufacturers. It was, simply, always about money.

Now, a British gentleman who was the first plaintiff in a huge, failed class action lawsuit is suing his own attorneys—really, the attorneys hired by his family—for pursuing a claim based on bad science, bilking the British government out of millions of pounds.

Matthew McCafferty, who developed autism three years (!) after receiving the MMR vaccine, is now suing his attorneys for “unjust enrichment as officers of the court by litigating a hopeless claim funded by legal aid by which you profited.” The class action lawsuit fell apart in 2003, after Wakefield’s research was fully discredited (he later lost his medical license because he lied and took advantage of vulnerable children.)

McCafferty’s attorney said:

“The original MMR vaccine litigation was supposed to be worth billions in compensation, not mere millions, but it cost millions in legal aid,” Shaw told the Times. “There was also a huge personal cost for the families involved – all the raised hopes and expectations, driven by the irresponsible media frenzy based on an unsubstantiated health scare and junk science. Not one penny in compensation was obtained for any child. The families are now just beginning to recover and take stock. They are scrutinising the actions of their former lawyers and medical advisers.”

It was supposed to be worth “billions.” Again, it was always about the money. It was never about the health of children.

And yet, here we are. Vaccine-preventable diseases are roaring back. Parents are fearful of one of the safest, most effective public health interventions ever developed. And, the biggest losers of all, millions of families affected by autism, distracted by false hope, lured into distrust by charlatans taking advantage of their children for profit. Just imagine:  if not for all of this manufactured, fake vaccine-worry, how much more progress we could have made developing a better understanding of the real causes of autism, and the best ways to help identify and treat it.

The evidence for the safety of vaccines and the lack of any connection with autism is overwhelming. I suppose the lawyers will continue to fight over the money. Can the rest of us move along now, and work together towards actually helping children?

Vaccine messages can backfire

The Pediatric Insider

© 2014 Roy Benaroch, MD

Vaccine coverage rates, overall, remain very strong in the USA. Well over 90% of kids are well-vaccinated, and the rates of vaccine-preventable diseases remains very low. Newer vaccines have proven especially safe and effective, including immunizations against severe diarrheal illness and cancers of the cervix and throat. In many ways, we are staying ahead in our battle against vaccine-preventable disease.

Yet: there are still pockets of intense resistance to vaccines, resistance that’s based on fear and lies and a willingness of anti-vaccine propagandists to say anything to decrease public confidence in vaccinations, doctors, scientists, and the parents who vaccinate their children. We’ll call these folks the “pro-disease lobby.”

In my practice, almost all families get all of their kid’s vaccines. We talk about what they’re for, we talk about the expected side effects (most babies have none, a small minority have some fussiness or fever), and we make sure parents know how to handle those and when to call if anything worrisome happens. We give out Vaccine Information Statements, which also list potential side effects, trivial and serious. Then we get the babies and children protected.

There are some families who have sincere questions, and those get extra time to get their questions answered, respectfully and patiently.

Then there are those 100% devoted to the pro-disease lobby. They don’t want questions answered—at least not by their pediatrician, not when the internet tells them what they want to hear. Frankly, I don’t even know why they come see me. If they think I’m evil or stupid or thoroughly misguided, why would they trust me with any aspect of child care?

Is there any way to convince these families that vaccines are a good idea? A new study, published today, looked at different vaccine messages: which ones work, which ones help, which ones hurt. The results are discouraging. Web-based surveys were conducted with about 1800 parents in 2011, who were then randomized to receive one of four pro-vaccine interventions.  The four different messages were: 1) information explaining the lack of evidence that MMR causes autism; 2) information about the dangers of vaccine-preventable diseases; 3) images of children who had diseases that could have been prevented with vaccines; or 4) a dramatic narrative about an infant who almost died of measles.

None of these messages, none of them, increased parents willingness or intent to vaccinate. In fact, among parents who were already vaccine-hesitant, these messages boosted vaccine misperceptions. For instance, specific evidence about the lack of a credible MMR-autism link further decreased the intent to vaccine among the parents who were already the most skeptical prior to the study. And the dramatic story about the child sick with measles increased the perception of MMR side effects among parents who already distrusted the vaccine—even though that story had nothing to do with side effects of any vaccine.

Among parents who have the strongest anti-vaccine views, no approach seemed to soften their stance. Instead, most of these attempts to communicate science-based information backfired—increasing anti-vaccine sentiment, in many cases reinforcing specific wrong beliefs that were not even relevant to the message given.

This jibes with my own experience, and what pediatricians say around the water cooler (more likely, honestly, the coffee maker.) The true anti-vaccine, pro-disease parent is essentially in a cult, with fixed delusional beliefs far outside reality. Talking with them only increases their anger and hardens their stance. People do not like to believe that they’re possibly wrong, and would rather listen to viewpoints that agree with their own, even at the cost of their own health. That’s too bad, because their children suffer, and our children suffer too.

Jenny McCarthy continues tireless crusade to kill us

The Pediatric Insider

© 2013 Roy Benaroch, MD

Jenny McCarthy—yes, that Jenny McCarthy, Playmate of some years ago, World Wrestling Federation eye candy, MTV star, new host of The View, and vaccine advisor to the misinformed—is now shilling for e-cigarettes.

Though traditional cigarette advertising is heavily restricted, so far e-cigarettes can be freely marketed to everyone. And that’s just the opportunity Ms. McCarthy needs. So far, she’s concentrated her public health efforts on undermining vaccinations and killing young children. It’s nice to see her branching out to do her part to hook teens and young adults on a new fad to ruin their hearts, give them cancer, and shorten their lives.

And still, some people continue to look to her for health advice.

Ultrasounds and autism: Another media scare!

The Pediatric Insider

© 2013 Roy Benaroch, MD

Emily wrote in about an article about prenatal ultrasounds and autism: “I saw this on The Daily Beast (Newsweek) today. Is the media trying to freak us expecting couples out or what? How big of a question is this in scientific circles or is this just sensational stuff? Sometimes I think there should be studies about how the internet causes anxiety disorders!”

A good question… and another post that I’m going to put under my new category, “Guilt Free Parenting.”

The Daily Beast headline and tag reads: “Are Ultrasounds Causing Autism in Unborn Babies?” and “Scientists are uncovering disturbing evidence that those sneak peaks at baby could damage a developing brain.”

I wonder how all of this accumulated hysterical, sky-is-falling reporting is damaging adult brains. As Emily said, the internet seems to cause anxiety disorders, and it’s articles like this that get everyone worked up.

First: autism is a complex neurodevelopmental disorder that causes problems with communication, social interactions, and repetitive behaviors, starting very early in childhood. The best current evidence shows that whatever’s gone wrong, it’s going wrong very early in life, possibly even before babies are born. There are strong genetic influences, and there is still a lot we don’t know about what causes autism and how to best treat it.

Autism is especially scary because we’re hearing so much about it. It may be as common as 1 in 50 boys, and it seems like the incidence is rising dramatically—but a lot of that apparent increase is because of an ever-widening definition of autism, combined with efforts at early detection and what’s called “diagnostic substitution” (kids who would have once been diagnosed with mental retardation or other disorders are now diagnosed with autism.) But whether the true rates of autism are increasing or not, it’s certainly a huge problem for families and communities, and increased awareness, early detection,  and early treatment are urgently needed.

Because the causes of autism remain unclear, there’s a lot of speculation about what might be going on. If you Google “causes of autism”—and please, please don’t do that—you’ll find all kinds of speculation about toxins and parenting styles and government conspiracies and evil doctors who are eager to profit by harming children. You’ll also find a few tantalizing, genuine leads, things that might actually make sense. Those are what legitimate researchers are trying to study.

So what about ultrasounds? It is true that prenatal ultrasounds are being used more commonly, and the rise in their use generally follows the trend in the observed rise in autism over the last 20 years. But that observation, alone, doesn’t really show that one thing causes the other. After all, over the last 20 years we’ve also seen a dramatic increase in cell phones, cable television, frozen food, Oprah, personal computers, and Starbucks; we’ve also seen a decline in the prevalence of cursive handwriting, licking stamps, and the Sizzler Steakhouse chain. Are any of these connected to autism, or to each other? Maybe. Maybe not.

Is there some basic science about ultrasounds that makes a connection with autism plausible? Again, maybe-sort-of. Research on the effect of ultrasounds on developing mouse brains has shown a difference in the way brain cells move and migrate—but those studies looked at ultrasound exposures for many hours a day, and mouse brains develop much more quickly than ours do. We’ve also got much bigger brains, and much more tissue between our babies and an ultrasound probe than mice. Lab research on the effects of ultrasound on moving cells or bubbles is similarly unconvincing—something to think about, but a huge leap from there to “ultrasounds cause autism.”

Several studies have looked for any direct biological effect of fetal ultrasounds on human children. A 1978 report looked at about 1000 infants of mother who received amniocentesis, ultrasound, or neither—it found no developmental effects of ultrasounds. In 1984, a different group looked at 425 children, finding no biologically significant differences among those who were and were not exposed to diagnostic ultrasounds. There are also many studies looking at potential ill-effects of ultrasound technology for diagnostic use in babies, children, and adults—there are none caused by the ultrasound itself. For those of you who’d like even more detail, an excellent review of these and many other studies about ultrasounds and autism is here (unfortunately the full article is behind a paywall.)

So what’s The Daily Beast talking about—are scientists, as they say, uncovering “disturbing evidence”?

This is what’s actually reported in the article, in order of appearance:

1. References to a study showing that among low-risk pregnancies, routine ultrasounds don’t improve outcomes. This is true. It’s irrelevant to the title or thesis of the article, but it’s true. Media lesson #1: if you don’t have a study to prove your point, talk about a different study that says something else entirely.
2. Ultrasounds drive up the cost of care. Again, correct. Again, irrelevant. See point #1.
3. Women who undergo frequent ultrasounds are more likely to have a pregnancy where the baby is found to have growth restriction. Well, this is true. It’s also true that if you look outside you’re more likely to know if it is raining. Fetal growth restriction is diagnosed by ultrasound. If you don’t look, you don’t know it’s happened. But looking outside doesn’t make it rain; and looking at an unborn baby with an ultrasound doesn’t cause the baby to be small. And, in any case, this is again irrelevant to autism. See point #1.
4. The author of the article has written a book in part about her assertion that ultrasounds are to blame for what she calls “an astronomic rise in neurological disorders among America’s children.”
5. The mice studies I referenced before—those come up now, several paragraphs in, the first even remotely relevant material. The lesson here: if you are a mouse, do not get seven hours of ultrasounds a day.
6. A neurologist named Manuel Casanova shares the author’s concerns, and says he and colleagues have been testing the ultrasound-autism hypothesis for three years. However, and this is important: after several technical paragraphs about his ideas, he’s uncovered zero evidence to support this claim. What he’s saying are generalities about brain development that are true, and he’s juxtaposing this against information about ultrasounds and information about autism, but he doesn’t in any way refer to any of his or anyone else’s actual research establishing a connection. These are ideas. Ideas are not evidence.

That’s it. The whole article.

Now, there is a reasonable point that I will agree with—prenatal ultrasounds do not necessarily improve the health of babies, and they’re often unnecessary. Vanity ultrasounds to take 3-D pictures of unborn babies use far more energy, and it’s not implausible that there could be ill-effects—things like this are not medical uses, and ought to be discouraged until there is definitive proof of their safety.

That being said, there is no evidence for a link between ultrasounds and autism, none whatsoever. It’s not being uncovered. It’s just not there.

More reassurance for parents on vaccines and autism

The Pediatric Insider

© 2013 Roy Benaroch, MD

First, it was the MMR-autism link—that turned out to be a complete fabrication, a fraud invented by a single “researcher” who made up his data. He was taking money from plaintiff’s lawyers, and he was trying to patent his own, competing vaccine. Too bad for the scare and the resulting surge in measles.

Then, the mercury connection. A mercury-containing preservative, thimerosal, came under scrutiny. To be safe, it was removed from almost all vaccines in 1999—and rates of autism didn’t fall one bit.

The most recent vaccine-autism link can be abbreviated as the “too many too soon” hypothesis, that somehow the antigens in vaccines “overwhelm” the immune system, leading to mischief. It doesn’t matter that the quantity of antigens from the current generation of vaccines is far fewer than what was used in the past. Those needles have got to be doing some harm, right?

The “too many too soon” idea never made any sense, from a logical or scientific standpoint—it’s well deconstructed here. The “load” on the immune system from ordinary life, from the exposures we all have from living in a world full of bacteria and germs, is hugely greater than the comparatively tiny exposures from vaccines. But the true, hardcore anti-vaccine propagandists have found their latest idea, and as usual they don’t need no stinkin’ evidence.

Still, there is evidence. For the many families who have sincere questions about vaccine safety, it’s good to have yet another study to add the mountain of evidence that vaccines are safe, and that vaccines do not cause autism.

Published in The Journal of Pediatrics this month, this study compared children with autism (including several subtypes) to typically developing children. They combed records to determine just how many vaccines and how many vaccine components were given, to see if they could find a link. Could increasing vaccine exposures increase children’s risk of autism?

No. Increasing exposures to the antibody-stimulating products in vaccines during the first two years of life did not increase the risk of developing any autism spectrum disorder.

At this point, the evidence for the lack of any vaccine–autism link is overwhelming. Continued vaccine study for any sorts of side effects needs to continue, but the singular focus on vaccines as the cause of autism as voiced by some in the autism community has become a hindrance to genuine progress and a public health nightmare. Let’s keep our kids healthy. Make sure your kids are fully vaccinated, on time and by the established schedule. It’s time to put this vaccine-autism thing behind us, so we can speed up the progress towards better understanding, prevention, and treatment. I’d hope that’s something we could all agree on.

Mercury in vaccines: Changing perspectives, changing minds

The Pediatric Insider

© 2013 Roy Benaroch, MD

News from the vaccine world: The AAP has announced that it supports the WHO’s position that the mercury-containing preservative, thimerosal, is safe, and should continue to be used in vaccines.

The first I can recall hearing the word “thimerosal” was on a bottle of contact lens solution, as a teenager. “Does not contain thimerosal”, the container said. “Safe and gentle on eyes.” What was this thimerosal, and if it could hurt my eyes, why would anyone put it in contact solution?

Thimerosal has been around since the early 20^th century, used as a preservative to prevent the growth of bacteria and fungi in sterile solutions. It is, objectively, phenomenally safe—no study has ever found a toxic effect of this stuff in humans at anywhere near the amounts that we’ve ever been exposed to it. We know it can prevent multi-dose vials of vaccines (and other injectables) from developing dangerous contamination, and we know how to safely use it in manufacturing and producing health products. It’s cheap, it’s safe, it works. So what’s the problem?

The problem is mercury. Thimerosal contains an organic compound called “ethyl mercury”. Though ETHYL mercury has a very low potential for toxicity, similarly-named METHYL mercury is an industrial pollutant that can cause neurologic damage and other problems, especially with high or prolonged exposures. But METHYL isn’t ETHYL, any more than ETHANOL (=ethyl alcohol, found in beer, causes drunkenness when consumed in ordinary amounts) is the same as METHANOL (=methyl alcohol, which can make you blind and dead if you drink just a little.)

Nonetheless, “mercury” is scary, and in 1999 the AAP and the CDC agreed that it would be safest for mercury-containing preservatives to no longer be used in children’s vaccines. And over a few years, that’s what happened. Vaccines were switched to be produced in more-expensive, single-use vials. It wastes a lot of glass, but you don’t need a preservative if a vial is only used once.

Once concerns about mercury began to swirl, a vocal segment of the autism community latched onto mercury as the cause. Despite removing mercury from all vaccines (except some flu shots), the rates of autism have continued to increase. There has never been any evidence of any harm from the mercury that had been used, and most of the autism community has moved on past the mercury idea. Worth looking into? Yes. Plenty of evidence that mercury’s not the culprit? Yes. Time to pursue other leads? Yes.

(As a side-note, based on a fraudulent 1998 paper some began to think MMR was an autism trigger. That has also turned out to be false. Ironically, no MMR vaccine ever contained any thimerosal. Still, the “mercury” and “MMR” media circus kind of intertwined and mixed up the stories, leaving parents breathless with unnecessary worry. Way to go, media.)

What have we learned since the removal of thimerosal from American vaccines in 1999? Autism rates have not decrease (they’ve continued to increase, perhaps even faster than before.) No evidence of any harm from thimerosal exposure has ever been uncovered. Extensive studies have supported the safety of the preservative, showing, for instance, that it is quickly and easily excreted from the body. It’s an academic point in the USA, anyway: thimerosal is not coming back.

But what about the rest of the world? We’ve got plenty of money, here, to be extra-cautious (or extra-indulgent of worry, perhaps.) But making single-dose vials of vaccines costs a whole lot more, and there is no practical, proven, safe alternative as a preservative for vaccines. So the same AAP that in 1999 suggested that the US stop using thimerosal is now saying that it’s OK for everyone else. I know: sounds dubious. But I think given what we’ve learned and confirmed about thimerosal’s safety, the AAP made the right call.

Detailed review from CDC

Long article reviewing vaccine-autism speculation

Maternal illness and autism

The Pediatric Insider

© 2012 Roy Benaroch, MD

This week’s autism headline: Flu, fever during pregnancy linked to autism risk.

Researchers in Denmark reviewed health information from a group of about 100,000 children born between 1997 and 2003. The mothers had been interviewed during and shortly after their pregnancies to determine who had had infections, fevers, or other health issues during pregnancy. Now that the children had grown to 8-14 years of age, the study looked backwards to see if the children developed autism had mothers who reported more infections or fevers during pregnancy.

The good news: for many minor infections, including common colds or short-lived fevers, there was no significant association with autism. However, mothers who had recalled having the flu had about double the risk of autism in their children, and mothers who reported a fever lasting over a week had triple the risk.

The authors themselves stress that these are preliminary findings, and that their complicated mathematics could have exaggerated trends that aren’t really significant. Still, there is animal data that shows inflammation from infection during pregnancy can indeed influence fetal brain development. These findings about flu and fever are plausible.

This study adds to the growing evidence that at least in many cases, the causes of autism begin well before a baby is born. Previous research has shown in increased risk of autism with older fathers, maternal obesity, and closely spaced pregnancies. It is very likely that there are numerous, overlapping causes of autism that include genetic, prenatal, and environmental factors. We’re learning more and more, but we’ve still got far to go.

Back to the current study: the overall risk of having a child with autism following influenza is still low—there is no need for panic or extensive watchfulness. However, this study provides yet more evidence that pregnant (or expecting-to-get-pregnant) moms need to protect themselves from infection. Eat right, sleep right, wash your hands, avoid sick people. And please, get yourself and your children influenza vaccines. Want to avoid autism? Vaccinate!

Book review: The Panic Virus: A True Story of Medicine, Science, and Fear

The Pediatric Insider

© 2011 Roy Benaroch, MD

It could have been a riveting fictional thriller, the story of how a handful of unscrupulous scientists took advantage of parents’ fears to create a false hysteria that dominated the media and led to a resurgence of diseases in the developed world. Unfortunately, the tale of The Panic Virus by journalist Seth Mnookin is true.

Mnookin recounts the history of vaccines, and the history of accompanying anti-vaccine worries. From very early on, some parents and politicians were distrustful of vaccination, perhaps because it seemed to subvert nature’s plans for our children. There is something inherently odd—and maybe a little creepy—about deliberately inoculating a child with germy material to prevent disease.

But prevent disease, it does. Mnookin’s book isn’t heavy on the details of the public health impact of vaccines, but it does make the point in chapters about children suffering from vaccine-preventable illnesses that vaccines have been tremendously successful in keeping children healthy.

Rather than focusing too heavily on the science of vaccinations or the epidemiology of shifting patterns of disease, Mnookin’s book focuses on the people involved in the story. One point is abundantly clear: parents from both sides love their children, and want the best for their kids. Mnookin doesn’t criticize non-vaccinating parents for their belief, but rather explores how loving, educated parents can be manipulated to feel that way.

His strongest, most direct criticism is directed at the media, who time and again failed to even do cursory research into the stories that they reported. It took only a handful of fringe “scientists” to manufacture (and profit) from the story—and that was only possible because the media chose to portray their side as the David versus the cold, uncaring Goliath of the medical establishment. The media found a story that captivated, enthralled, and (above all) sold. Media figures including Oprah Winfrey, Don Imus, and Jennie McCarthy relied on their own manufactured frenzy, public health be damned. You want information that can genuinely help you raise your kids? Mnookin makes the case that the mainstream media is the last place on which you can depend.

Mnookin’s strongest material explains the “cognitive biases” that color how we perceive our world. Our feelings and impressions guide us through our days, but aren’t always the most objective, best way to make decisions. You want to pick a shirt that looks best on you? Go with your gut. You want to choose the best medicine to keep yourself healthy? It’s better to rely on science—real science—to do the plodding, slow work of separating fact from fiction.

But people, especially people desperate for help and answers, may understandably find it difficult to wait for science to untangle the complicated story. Mnookin’s book covers in great detail the characters and charlatans that took advantage of people—robbing them blind, and steering them into years of false hopes and promises.

Readers will also learn the complex history of the autism advocacy movement within the United States. They may be surprised to learn that not all—not even most—parents of autistic kids buy into the anti-vaccine rhetoric. There have been great schisms among the large autism charities about this very issue, and unfortunately it has become a great divider and distraction. Years from now, parents may place the blame squarely on the anti-vaccine propagandists for over a decade of wasted time and money and heartache. Tremendous strides are being made in researching the causes and treatment of autism. How much further ahead would be have been without this unnecessary dead-end?

Mnookin’s book ends with a detailed and fascinating recount of the Special Master’s rulings from the Vaccine Court in 2009. After a full seven years of proceedings, during which reams of evidence and documents were reviewed, the ruling was unmistakably strong and unambiguous. Calling the evidence “so one-sided”, the vaccine court ruled that there was no possibility that vaccines had caused autism in the petitioner’s children.

There are stronger books about the science of autism and vaccines, and about the real progress that’s being made in early identification and treatment of autism. (The nearly 100 pages of references provide more-than-ample sources for further reading.) Mnookin’s book concentrates on the people and the emotions, to help the reader see how vaccine distrust became such a powerful dogma in the autism community. False, yes; but it was a common thread of hope, and it bound families together who had otherwise felt alone and helpless. There are far-better resources now for parents. Books like this illustrate a far more helpful message: there is no reason to distrust vaccines, and there is far greater hope for understanding a real cure from the science community than from the virulent anti-vaccine crowd. Perhaps Mnookin’s book will be a way to bring a new hope and a new community to families fighting autism.

Diet and ADHD: Anything new?

The Pediatric Insider

© 2011 Roy Benaroch, MD

The Lancet has published another terrible, worthless study guaranteed to confuse parents.

Back in 1998, the world-renowned British medical journal The Lancet published a study that singlehandedly created the entire MMR-autism “manufacturversy.” The study itself was an absolute fraud based on fake data, designed to make money for its lead author. Red flags about the study were ignored by The Lancet’s editorial board for years; but finally most of its authors retracted the study, and then The Lancet withdrew it. Still, the damage was done. Falling vaccine rates led to a return of measles and surging rates of pertussis. Fooled by an unscrupulous liar and a media relishing any opportunity to sensationalize garbage, many parents still distrust vaccines.

And now, The Lancet has done it again. A terrible, worthless study has been published, guaranteed to confuse parents. Maybe their motto ought to be “anything that’s fit to make headlines.”

The study, titled “Effects of a restricted elimination diet on the behaviour of children with attention-deficit hyperactivity disorder (INCA study): a randomised controlled trial”, was supposed to examine the relationship between diet and behavior in ADHD. It’s an important topic. Many children have trouble with focus and attention, and many parents feel that diet may play a role. Though many older studies have been unable to confirm a consistent effect of foods on behavior, a 2007 BMJ study did show at least a small effect of preservatives and dyes in worsening behavior in children.

What has made studying diet and behavior difficult is separating out what is called “confirmation bias.” Parents who are convinced that, say, a sugary meal will worsen their child’s behavior are very apt to notice when bad behavior follows a junk food meal. But those same parents probably don’t notice when relatively good behavior occurs after sugar, or when bad behavior doesn’t really come after a meal. This isn’t because those parents are dumb or delusional—it’s just human nature. We all subconsciously find evidence to support what we already believe, and ignore evidence to the contrary.

Good science seeks to minimize the effects of this kind of bias by using “blinded control groups”, where the observers don’t know if the child was exposed to a surgary diet or not. In the older 2007 BMJ study, the families were truly blinded: neither they nor the researchers knew which kids received a supplement that was a preservative-n-chemical cocktail, versus which ones got a supplement of “nothing”. Only after the parents made their behavioral observations, and after the researchers performed their statistics, were they allowed to know which kids got which diet. That’s good research. The BMJ study did show a statistically significant change in behavior, though the effect was fairly small. Still, it’s a tantalizing start, and the group is now pursuing a more-specific study trying to identify which chemicals and preservatives might be the culprit. It’s a slow process, but carefully-done, well-controlled research should give us a clear answer on this topic.

Unfortunately, the research group publishing in The Lancet didn’t feel the need to bother with these sorts of protocols. In the initial phase of their study, 100 kids were divided into two groups of 50. One group continued to get an ordinary diet (though they did receive counseling about healthy food choices), and the other group was put on a highly restrictive diet of mostly rice, meat, vegetables, pears, and water. But all of the parents knew exactly what group their child was in. At the end of this study period, about 60% of parents of children in the restricted diet group had improved, compared to “none” of the children in the non-restricted diet.

Wait a minute here. If something completely random happens—let’s say I ask parents to flip a coin, and tell me heads or tails—about 50% of the parents should report “tails.” In this behavioral study, if I ask parents to just decide, “did things get worse or better,” if there was just a random scatter of observations, 50% of the parents should say “worse”, and 50% should say “better.” How could “none” of the parents have seen any improvement? Surely at least some of the children had a few good weeks, even with no change in diet, no?

And if 60% improved in the restricted group, that means 40% didn’t improve, or got worse. A 60-40 split isn’t really that impressive, is it?

Besides, with no blinding whatsoever, what does it even mean?

The study gets worse. There was a phase 2 that took the “diet responders” and put them on even more restricted diets based on blood testing for allergies—but using an outdated, worthless test that’s been invalidated for years. This further phase found that the blood tests didn’t help guide parents to diets that would help, which is no surprise because those blood tests don’t work. We already knew that.

There you have it, another terrible study from The Lancet, which demonstrates nothing in a perniciously misleading way. Perhaps there is a link between diet, chemicals, preservatives, and behavior—and certainly, trying to put children on a diet that avoids these sorts of chemicals can’t do any harm. But these authors, and the editorial board of The Lancet, ought to be ashamed of publishing such a worthless study. Do you think the media, and the public, are ready to get duped again?